(No subject)

[Guest guest]

<<Anyway what I know about NY and

NJ I have learned from television but doesn't anyone have any

connections up

there to contact to put some muscle on these boys (the ivory towered

docs)?>>

Hey Dollface! We'd like to help you,see? But we gotta problem, see?

They won't believe us at the hoity toity Country Clubs that we play golf

in black suits Gucci's and dark shades, see? Can't get on the courses,

see? What's a goodfella to do?

chris

[Guest guest]

Mr. Goodfellow,

Thanks for your help anyway. I don't know of anything that might help you get

on the golf courses or in the country clubs. I do believe there is some money

to be found in this business somewhere. Perhaps the universities might be a

good place to look. Maybe this would require a call to the godfather. LOL.

Kathleen

<<Anyway what I know about NY and

NJ I have learned from television but doesn't anyone have any

connections up

there to contact to put some muscle on these boys (the ivory towered

docs)?>>

Hey Dollface! We'd like to help you,see? But we gotta problem, see?

They won't believe us at the hoity toity Country Clubs that we play golf

in black suits Gucci's and dark shades, see? Can't get on the courses,

see? What's a goodfella to do?

[Guest guest]

ROFLMAO...I love it, I needed that laugh, thanks Chris.

Marta

>From: " D " <achrisfox@...>

>

>

><<Anyway what I know about NY and

>NJ I have learned from television but doesn't anyone have any

>connections up

>there to contact to put some muscle on these boys (the ivory towered

>docs)?>>

>

>

>Hey Dollface! We'd like to help you,see? But we gotta problem, see?

>They won't believe us at the hoity toity Country Clubs that we play golf

>in black suits Gucci's and dark shades, see? Can't get on the courses,

>see? What's a goodfella to do?

>

>chris

[Guest guest]

----Original Message Follows----

From: IAMAVIPTWO@...

Date: Tue, 13 Oct 1998 23:22:05 EDT

lyme-aidonelist

Reply-to: lyme-aidonelist

Subject: [Lyme-aid] Re: " America On Lyme " Newsletter

From: IAMAVIPTWO@...

<<lYME PATIENTS: I supose most of you know of the lab in California,

called

IGENEX Labs in Palto Alto, California. They do the most accurate, and

probably one of the only urine antigen tests around that is

worthwhile.>>

This is the only test I have had and I have done it twice 18 months

apart. It came back worse the second time than the first. I was sure

it would, but the doctor said on that last particular visit that the

anitbiotics (Zithromax and intermittant bicillin injections, the

injections were added when I asked him to be more agressive last year)

were enough to take care of any infection and that my problem was my

weight. I told him I received another bite and he said I was covered

and that if I took off some weight, I would feel alot better. Then he

proceeded to tell me how I must eat too much, no exercise and how HE

exercised regularly and his aerobics group always cheered for the unfit

people who joined and lost weight. What a pompous ass, let's have a

show of hands from everyone that can do aerobics after all day at work.

Better yet, let's have a show of hands from anyone that can still see

straight after any exertion.

<<You must have been off antiobiotic for awhile, then on med for 5

consecutivite days, capturing the

first morning mid sample on day 4, 5, 6, freezing in tubes supplied and

overnighted back.>>

This is interesting as I didn't change my regimin at all before my test.

I wonder what kind of difference it makes. My antigens were 243 with

full dosage of Zithromax.

I can't follow alot of the discussions when everyone starts to talk PDR,

the old concentration is just plain history and it is frustrating. It

has however made me much more tolerant of the handicapped I deal with

sometimes. I can empathize more now than ever.

Oh well,

Chris

[Guest guest]

Marta,

I would be VERY interested in hearing how your doctor explained the reason for

the weight gain to you. I hardly eat anything and have gained over 40 lbs. I

can't believe it's just from lack of exercise.....

In a message dated 10/14/98 9:21:22 AM Eastern Daylight Time,

mlmccoy@... writes:

<<I am fortunate though that I have a good Lyme doctor, who understands why I

am gaining weight.>>

[Guest guest]

Hi

I too have gained weight since I have been sick with Lyme. It is so

frustrating to look bad as well as feel bad. I am fortunate though that I

have a good Lyme doctor, who understands why I am gaining weight. I hope

you can find another doctor who will be more supportive. I have a favorite

Aunt, that I now avoid, because everytime she sees me, she talks about

exercise, that is her cure all for everything, from world peace to who knows

what else. Getting up in the am with a stiff, arthritic body, and other

aches and pains, the last thing I want to do is cause more pain.

Your comment about finding more tolerance for the handicap is true. I

sometimes wonder if I got this illness for a reason, something I needed to

learn about myself or others.

Hang in there,

Marta

[Guest guest]

great your dr. knows about Igenex Labs. With urine antigens that high

you must feel really punk. I don't know about your doctors empathy however,

as most lyme patients go either anoroxic or gain alot of weight. My dr. tells

me that they usually return to more normal weight after getting better. I(if

and when that does occur). My son, on one hand, lost about 50 lbs, my

however, gained about 70!!

Being unable to get out of bed for 4 years might have had something to do with

slowing down my system......hummmmmmm don't you think? Water therapy was

pleasant for range of motion exercises in the warm water, did it two or three

times a week. Not stressful, however, I did it when I didn't work, and it was

ALL I did that day. Woulod love to have some of these drs. live with this

for a month or so.

Any show of hands for that?? " " ??????????

Me for one,

Regars,

Gail

[Guest guest]

<<With urine antigens that high

you must feel really punk. I don't know about your doctors empathy

however,

as most lyme patients go either anoroxic or gain alot of weight. My dr.

tells

me that they usually return to more normal weight after getting better.

I(if

and when that does occur>>

Thanks for the response. I can't let myself give in to it just yet. I

was impressed with the letter " Gee, but you look so good. " I think this

is part of the reason the doctor doesn't take me too seriously. I won't

stop until I hit a brick wall. Even when I was VERY symptomatic and

could hardly see, I would walk 8 or 10 feet with my eyes closed to try

and nap, (go ahead and laugh, but it worked). I can't seem to allow

myself to slow down until I drop. I did gain alot of weight, but I have

been starving it back off. (Using FitAmerica herbal capsules and for

some reason I felt better when I started using them - Dr. Compassion

thinks they have herbs with anti-inflammatory properties .)

<<Being unable to get out of bed for 4 years might have had something to

do with

slowing down my system......hummmmmmm don't you think? >>

Reaching this point horrifies me, I have worked so damned hard to get

where I am that I can't let his apathy take it all from me. I believe

that if someone vigorously helps me now, I don't have to end up in bed.

I can't sit still by nature, (even if I can't remember what I got up to

do - haha!). I would go insane in bed.

<<Water therapy was

pleasant for range of motion exercises in the warm water, did it two or

three

times a week. Not stressful, however, I did it when I didn't work, and

it was

ALL I did that day.>>

I can appreciate that, some days feel like they're 80 hours long. I can

hardly make it until dinner time

<<Woulod love to have some of these drs. live with this

for a month or so.

Any show of hands for that?? " " ??????????>>

Mine's way up there. How about the doctor that is from the Ivy League

school (with insurance connections)that claims Lyme is just depression?

When my Dr. Wonderful told me that I privately wished someone he loved

had it and wondered if his opinion would change then.

Oh, well...

D.

----------------------------------------------------------------------

[Guest guest]

In a message dated 10/21/98 11:39:22 PM Eastern Daylight Time,

IAMAVIPTWO@... writes:

<< Woulod love to have some of these drs. live with this

for a month or so.

Any show of hands for that?? " " ??????????

Me for one,

Regars,

Gail >>

Hi Gail,

My doctor has Lyme Disease. He has had it for years. He had a remission

that lasted about 2-1/2 years (his longest remission ever) and recently put

himself back on antibiotics. I must say that I believe he is so

understanding, attentive, and sympathetic because he *has* experienced this

dreadful disease himself. I remember telling him about an " odd " symptom I had

and he proceeded to tell me an entire story about how the same symptom

affected him. It's a real shame that doctors cannot empathize and that they

(along with the general public) seem to have to experience this first-hand in

order to have any clue at all as to what we are living with. Yes, I hate to

wish this on anyone, but I must admit that I have often thought about wishing

this disease on many ignorant, uncaring people, just so they could know that

we are not lazy whiners who just want attention! I bet it would convince them

otherwise!

Oooooooo, I'm mean, aren't I???!!!

Hugs,

Chrissy Ü

[Guest guest]

MY HAND IS UP!!!!!!!!!!!!

[Guest guest]

Hey Chris....I don't mean to be mean either, just want doctors and family to

understand...like you. Its like the old " walk a mile in my shoes " etc. How

long have you been ill? What kind of treatment you on now? Do you live on

east coast? We used to have a group here, but I think it has disolved,

besides, it was in the evening and it was very difficult to have the energy to

go out in the evening.

Hope to hear from you,

Regards,

Gail

[Guest guest]

Thanks! I wonder what physicians and the CDC will tell the public when they

find out how much pain and suffering has been caused by their ignorance?? How

many people died of heart complications, or other stuff. I almost feel like I

was obducted my aliens.....its so horrible and NOONE BELIEVES YOU AND HOW SICK

YOU ARE. wHEN i APPLIED FOR DISABILITY, THE DOCUMENTATION WAS OVER 700 PAGES

FROM DRS. YET, THE JUDGE WANTED ME TO CLAIM I WAS DISABLED FOR BEING

OVERWEIGHT, (BUT i DIDN'T MAKE THE AMOUNT I NEEDED TO QUALIFY...AND BESIDES, I

WANTED THEM TO KNOW ABOUT THE SUFFERING AND SIX YEARS I SPEND FIGHTING THE

SYSTEM TO COLLECT DISABILITY, WHEN PEOPLE WHO ARE ALOCOLICS CAN COLLECT,,

WHAT IRONY. Anyway, finally got approved, but it was too little too late.

anyone have happier experiences?

Love and strength to all,

Gail in PA

[Guest guest]

gail.....only took me 2 years to fet ssd....and it was retro...... guess

having mental problems from lyme makes it easier....my friend whose is really

fried from lyme got ssd first shot......he has seizures due to lyme.......oh

well and i thought 2 yrs with no $$$$$$ was bad......plus i am getting a

pension also now.......38 k between the 2 .....use to make over 100k but i

feel like a millonaire after the last 2 years....those yrs i made lass than

10k per yr for a family of 4 and we survived it( god put some wonderful people

in my life) now we know how to live on almost nothing......god bless.....keep

ur chin up......things happen that makle u feel better.....i have to look at

the positive side of life......had this disease for 8 years......don't know

why but it doesn't matter i try to make the best with what was dealt

me.......the alternative is bleek,,,,so i will keep on living to the best of

my limited ability

reid

[Guest guest]

Reid: I find it curious that almost everyone on this network i.e. with lyme

has a very healthy spiritual life and sstrong faith. Could it be that our

" storm " makes us stronger in our faith, and is almost a kind of blessing? It

seems to me that we really start to " look up " when we are down on our knees!

God bless,

Gail

[Guest guest]

AMEN....(LOL) really it seems that thru defeat we gain strength......thats

how it worked for me ....i feel god has a bigger plan for me know

[Guest guest]

Faith is all we have to hang on to! When you're flat on your back the only

way to look is up! Prayers to all!

[Lyme-aid] Re: (no subject)

>From: IAMAVIPTWO@...

>

>------------------------------------------------------------------------

>Help support ONElist, while generating interest in your product or

>service. ONElist has a variety of advertising packages. Visit

>/advert.html for more information.

>------------------------------------------------------------------------

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>/archives.cgi/Lyme-Docs

>Email: -subscribeonelist

>You may substitute " unsubscribe " , " digest " , or " normal " for

>the word " subscribe " ( " normal " is the opposite of " digest " )

>

[Guest guest]

From: IAMAVIPTWO@...

Hey Chris....I don't mean to be mean either, just want doctors and

family to

understand...like you. Its like the old " walk a mile in my shoes " etc.

How

long have you been ill? What kind of treatment you on now? Do you live

on

east coast? We used to have a group here, but I think it has disolved,

besides, it was in the evening and it was very difficult to have the

energy to

go out in the evening.

Hope to hear from you,

Regards,

Gail

Hi Gail,

It took me a while to get back to you so I left the entire post to

remind you. I know you never meant to be mean, we all wish for things

without intending harm.

I have been treated since July of 1997 and I think I was bitten in the

summer of 1996 and 1995 then again this year. I have had some real

serious thoughts about my treatment. The doctor tapered off my zithromax

and cut out the bicillin entirely when I started to show improvement.

Now I'm getting bad again. I have decided to make my own program with a

little help from the unsuspecting doc. I have ceflin and zithromax which

I am taking one in the AM and one in the PM on my own, plus he wants me

in every two weeks for a bicillin shot. From what I am reading, he has

been very timid about treating me and I don't want to get worse and

worse because he is a jerk. If I can do as well as I am right now with

my antigens so high (243), I should be able to beat this. He has

declared me chronic with just two tests in 18 months and the second was

at my lowest dosage.

I live in New Jersey and got all my bites in my own yard. I am not a

tremendous fan of face to face meetings. I get too frustrated. I should

probably look for another doctor, but I use all the energy and focus I

have on my job.

Good to hear from you,

Chris

-

[Guest guest]

Its AMAZING. i FEEL THAT GOD HAS GREATER PLAN FOR ME TOO, HOPE I CAN GET

HEALTHY ENOUGH TO DO WHATEVER IT IS!!

gAIL

[Guest guest]

Thanks Harry

Take Care

Amy

[Guest guest]

here are some more funnies that a friend sent, hope you like them

[Guest guest]

Hi and others who may need to know,

Should you decide for any reason you want to unsubscribe temporarily, you can go

to the web page: / Sign on as a member, (if you have not

already done so, now is a good time to do it,) and use a password. The list(s)

you subscribe to will come up. Click on and you will have the option

to unsubscribe, switch to digest form or request no mail. The no mail feature

is great for when you are going to be away from your computer for a time, and

don't want mail piling up. , I took care of this for you, I used the no

mail feature, when you are ready to receive mail again, either let me know, or

follow the directions above,

Best to you,

Marta

[Lyme-aid] (no subject)

Yes, I do want to unsubscribe for the time being. Thanks.

[Guest guest]

Dear Happy,

I live in NJ, we get six months of disability payment here, I think you

cannot apply for SSDI until you are out of work six months, I could be wrong

and it could be different in other states, but do look into it. I was

recently approved for SSDI, with a Lyme diagnosis, it took me from March of

97 to Feb 99, which believe it or not is pretty fast considering I was

denied twice straight off, and then appealed before a judge with an

attorney. SSDI said in their letter I was disabled since 10/96, (the actual

date I stopped working) benefits were paid retroactively to March 97, which

was the date I applied. Once you apply, that is the date you will be paid

to retroactively, so the clock is ticking.

We are happy to welcome another nurse to the Lyme list, we have several.

Many of us especially those in the medical field are horrified when they

find out how little their doctors know about Lyme disease.

We are working to change that, and the introduction of the vaccine is giving

us lots of publicity if nothing else. Each of us has to educate our doctors

about Lyme and the need for long term antibiotic treatment.

Best to you,

Marta

-

>From: hapsquilt@...

>

>Marta

>Thanks for your info and words of encouragement. I just applied for my

short term disability and have been thinking about the SSDI, but was really

hopeful that I could get started on treatment and not have to do that. I can

see now I was living in a dream world! I am a nurse and have helped patients

for 25 years and can't believe this is so hard!! I really feel betrayed by

my profession! And my Dr. of 25 years! I will call the LLMD Monday and see

if she can suggest plan B.

>Will let you know what happens.

>Happy

[Guest guest]

happy...... GO TO SOCIAL SECURITY NOW!!!!!!!!!!!!!!

sorry to yell but from experiance i can tell u that it takes a long time to

get.....took me 2 years....apply now ....if u get better u can just amend ur

filing.......besides there is a 6 month waiting period from ur last day of

work........if u need any help e mail me or marta...we have been thru

it.......be as complete with ur info as u can ....and give them copires of

everything u can find on lyme.....be prepared to be turned down probably

twice and get a lawyer who is literate in ssd......they get a fee but only if

u reciegve ssd and then it is paid out of ur retro.........u go girl....NOW

Reid

[Guest guest]

marta, just alittle hint i found out.....my lawyer requested and was granted

a new date( the last day i stopped working) that became my retro date not

when i applied ....i was paid from then plus the six month waiting

period.....i last worked in july96 and filed december 96 got retro from jan

97 on.....thanks to a good lawyer......kewl huh..............but she should

file NOW!!!!!!!!!!!

Reid

[Guest guest]

In a message dated 5/24/1999 3:56:41 PM Eastern Daylight Time,

cheryl@... writes:

<<

Thanks for that informative information. You are a jewel! Do you know if

the thermometer can be the battery operated kind, I can't read the original

types? >>

ya know...it has been recommended by Dr. B. to use a regular glass

thermometer...but I was able to document easily with a regular thermometer

that I had subnormal temps...you are supposed to take the temps before you

even get out of bed...keep it by your bedside....BTW Cheryl...you really did

an awesome job...all I could do today after last night...was go to sleep

Bernadette